Anthony Stumbo’s heart sank after the doctor shared his mother’s chest X-ray.

“I remember that drive home, bringing her back home, and we basically cried,” said the internal medicine physician, who had started practicing in eastern Kentucky near his childhood home shortly before his mother began feeling ill. “Nobody wants to get told they’ve got inoperable lung cancer. I cried because I knew what this meant for her.”

Now Stumbo, whose mother died the following year, in 1997, is among a group of Kentucky clinicians and researchers determined to rewrite the script for other families by promoting training and boosting awareness about early detection in the state with the highest lung cancer death rate. For the past decade, Kentucky researchers have promoted lung cancer screening, first recommended by the U.S. Preventive Services Task Force in 2013. These days the Bluegrass State screens more residents who are at high risk of developing lung cancer than any state except Massachusetts — 10.6% of eligible residents in 2022, more than double the national rate of 4.5% — according to the most recent American Lung Association analysis.

The effort has been driven by a research initiative called the Kentucky LEADS (Lung Cancer Education, Awareness, Detection, and Survivorship) Collaborative, which in 2014 launched to improve screening and prevention, to identify more tumors earlier, when survival odds are far better. The group has worked with clinicians and hospital administrators statewide to boost screening rates both in urban areas and regions far removed from academic medical centers, such as rural Appalachia. But, a decade into the program, the researchers face an ongoing challenge as they encourage more people to get tested, namely the fear and stigma that swirl around smoking and lung cancer.

Lung cancer kills more Americans than any other malignancy, and the death rates are worst in a swath of states including Kentucky and its neighbors Tennessee and West Virginia, and stretching south to Mississippi and Louisiana, according to data from the Centers for Disease Control and Prevention.

It’s a bit early to see the impact on lung cancer deaths because people may still live for years with a malignancy, LEADS researchers said. Plus, treatment improvements and other factors may also help reduce death rates along with increased screening. Still, data already shows that more cancers in Kentucky are being detected before they become advanced, and thus more difficult to treat, they said. Of total lung cancer cases statewide, the percentage of advanced cases — defined as cancers that had spread to the lymph nodes or beyond — hovered near 81% between 2000 and 2014, according to Kentucky Cancer Registry data. By 2020, that number had declined to 72%, according to the most recent data available.

“We are changing the story of families. And there is hope where there has not been hope before,” said Jennifer Knight, a LEADS principal investigator.

Older adults in their 60s and 70s can hold a particularly bleak view of their mortality odds, given what their loved ones experienced before screening became available, said Ashley Shemwell, a nurse navigator for the lung cancer screening program at Owensboro Health, a nonprofit health system that serves Kentucky and Indiana.

“A lot of them will say, ‘It doesn’t matter if I get lung cancer or not because it’s going to kill me. So I don’t want to know,’” said Shemwell. “With that generation, they saw a lot of lung cancers and a lot of deaths. And it was terrible deaths because they were stage 4 lung cancers.” But she reminds them that lung cancer is much more treatable if caught before it spreads.

The collaborative works with several partners, including the University of Kentucky, the University of Louisville, and GO2 for Lung Cancer, and has received grant funding from the Bristol Myers Squibb Foundation. Leaders have provided training and other support to 10 hospital-based screening programs, including a stipend to pay for resources such as educational materials or a nurse navigator, Knight said. In 2022, state lawmakers established a statewide lung cancer screening program based in part on the group’s work.

Jacob Sands, a lung cancer physician at Boston’s Dana-Farber Cancer Institute, credits the LEADS collaborative with encouraging patients to return for annual screening and follow-up testing for any suspicious nodules. “What the Kentucky LEADS program is doing is fantastic, and that is how you really move the needle in implementing lung screening on a larger scale,” said Sands, who isn’t affiliated with the Kentucky program and serves as a volunteer spokesperson for the American Lung Association.

In 2014, Kentucky expanded Medicaid, increasing the number of lower-income people who qualified for lung cancer screening and any related treatment. Adults 50 to 80 years old are advised to get a CT scan every year if they have accumulated at least 20 pack years and still smoke or have quit within the past 15 years, according to the latest task force recommendation, which widened the pool of eligible adults. (To calculate pack years, multiply the packs of cigarettes smoked daily by years of smoking.) The lung association offers an online quiz, called “Saved By The Scan,” to figure out likely eligibility for insurance coverage.

Half of U.S. patients aren’t diagnosed until their cancer has spread beyond the lungs and lymph nodes to elsewhere in the body. By then, the five-year survival rate is 8.2%.

But regular screening boosts those odds. When a CT scan detects lung cancer early, patients have an 81% chance of living at least 20 years, according to data published in November in the journal Radiology.

Some adults, like Lisa Ayers, didn’t realize lung cancer screening was an option. Her family doctor recommended a CT scan last year after she reported breathing difficulties. Ayers, who lives in Ohio near the Kentucky border, got screened at UK King’s Daughters, a hospital in far eastern Kentucky. The scan didn’t take much time, and she didn’t have to undress, the 57-year-old said. “It took me longer to park,” she quipped.

She was diagnosed with a lung carcinoid tumor, a type of neuroendocrine cancer that can grow in various parts of the body. Her cancer was considered too risky for surgery, Ayers said. A biopsy showed the cancer was slow-growing, and her doctors said they would monitor it closely.

Ayers, a lifelong smoker, recalled her doctor said that her type of cancer isn’t typically linked to smoking. But she quit anyway, feeling like she’d been given a second chance to avoid developing a smoking-related cancer. “It was a big wake-up call for me.”

Adults with a smoking history often report being treated poorly by medical professionals, said Jamie Studts, a health psychologist and a LEADS principal investigator, who has been involved with the research from the start. The goal is to avoid stigmatizing people and instead to build rapport, meeting them where they are that day, he said.

“If someone tells us that they’re not ready to quit smoking but they want to have lung cancer screening, awesome; we’d love to help,” Studts said. “You know what? You actually develop a relationship with an individual by accepting, ‘No.’”

Nationally, screening rates vary widely. Massachusetts reaches 11.9% of eligible residents, while California ranks last, screening just 0.7%, according to the lung association analysis.

That data likely doesn’t capture all California screenings, as it may not include CT scans done through large managed care organizations, said Raquel Arias, a Los Angeles-based associate director of state partnerships at the American Cancer Society. She cited other 2022 data for California, looking at lung cancer screening for eligible Medicare fee-for-service patients, which found a screening rate of 1%-2% in that population.

But, Arias said, the state’s effort is “nowhere near what it needs to be.”

The low smoking rate in California, along with its image as a healthy state, “seems to have come with the unintended consequence of further stigmatizing people who smoke,” said Arias, citing one of the findings from a 2022 report looking at lung cancer screening barriers. For instance, eligible patients may be reluctant to share prior smoking habits with their health provider, she said.

Meanwhile, Kentucky screening efforts progress, scan by scan.

At Appalachian Regional Healthcare, 3,071 patients were screened in 2023, compared with 372 in 2017. “We’re just scratching the surface of the potential lives that we can have an effect on,” said Stumbo, a lung cancer screening champion at the health system, which includes 14 hospitals, most located in eastern Kentucky.

The doctor hasn’t shed his own grief about what his family missed after his mother died at age 51, long before annual screening was recommended. “Knowing that my children were born, and never knowing their grandmother,” he said, “just how sad is that?”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

Subscribe to KFF Health News’ free Morning Briefing.

At age 66, South Carolina physician Paul Rousseau decided to retire after tending for decades to the suffering of people who were seriously ill or dying. It was a difficult and emotionally fraught transition.

“I didn’t know what I was going to do, where I was going to go,” he told me, describing a period of crisis that began in 2017.

Seeking a change of venue, Rousseau moved to the mountains of North Carolina, the start of an extended period of wandering. Soon, a sense of emptiness enveloped him. He had no friends or hobbies — his work as a doctor had been all-consuming. Former colleagues didn’t get in touch, nor did he reach out.

His wife had passed away after a painful illness a decade earlier. Rousseau was estranged from one adult daughter and in only occasional contact with another. His isolation mounted as his three dogs, his most reliable companions, died.

Rousseau was completely alone — without friends, family, or a professional identity — and overcome by a sense of loss.

“I was a somewhat distinguished physician with a 60-page resume,” Rousseau, now 73, wrote in the Journal of the American Geriatrics Society in May. “Now, I’m ‘no one,’ a retired, forgotten old man who dithers away the days.”

In some ways, older men living alone are disadvantaged compared with older women in similar circumstances. Research shows that men tend to have fewer friends than women and be less inclined to make new friends. Often, they’re reluctant to ask for help.

“Men have a harder time being connected and reaching out,” said Robert Waldinger, a psychiatrist who directs the Harvard Study of Adult Development, which has traced the arc of hundreds of men’s lives over a span of more than eight decades. The men in the study who fared the worst, Waldinger said, “didn’t have friendships and things they were interested in — and couldn’t find them.” He recommends that men invest in their “social fitness” in addition to their physical fitness to ensure they have satisfying social interactions.

Slightly more than 1 in every 5 men ages 65 to 74 live alone, according to 2022 Census Bureau data. That rises to nearly 1 in 4 for those 75 or older. Nearly 40% of these men are divorced, 31% are widowed, and 21% never married.

That’s a significant change from 2000, when only 1 in 6 older men lived by themselves. Longer life spans for men and rising divorce rates are contributing to the trend. It’s difficult to find information about this group — which is dwarfed by the number of women who live alone — because it hasn’t been studied in depth. But psychologists and psychiatrists say these older men can be quite vulnerable.

When men are widowed, their health and well-being tend to decline more than women’s.

“Older men have a tendency to ruminate, to get into our heads with worries and fears and to feel more lonely and isolated,” said Jed Diamond, 80, a therapist and the author of “Surviving Male Menopause” and “The Irritable Male Syndrome.”

Add in the decline of civic institutions where men used to congregate — think of the Elks or the Shriners — and older men’s reduced ability to participate in athletic activities, and the result is a lack of stimulation and the loss of a sense of belonging.

Depression can ensue, fueling excessive alcohol use, accidents, or, in the most extreme cases, suicide. Of all age groups in the United States, men over age 75 have the highest suicide rate, by far.

For this column, I spoke at length to several older men who live alone. All but two (who’d been divorced) were widowed. Their experiences don’t represent all men who live alone. But still, they’re revealing.

The first person I called was Art Koff, 88, of Chicago, a longtime marketing executive I’d known for several years. When I reached out in January, I learned that Koff’s wife, Norma, had died the year before, leaving him hobbled by grief. Uninterested in eating and beset by unremitting loneliness, Koff lost 45 pounds.

“I’ve had a long and wonderful life, and I have lots of family and lots of friends who are terrific,” Koff told me. But now, he said, “nothing is of interest to me any longer.”

“I’m not happy living this life,” he said.

Nine days later, I learned that Koff had died. His nephew, Alexander Koff, said he had passed out and was gone within a day. The death certificate cited “end stage protein calorie malnutrition” as the cause.

The transition from being coupled to being single can be profoundly disorienting for older men. Lodovico Balducci, 80, was married to his wife, Claudia, for 52 years before she died in October 2023. Balducci, a renowned physician known as the “patriarch of geriatric oncology,” wrote about his emotional reaction in the Journal of the American Geriatrics Society, likening Claudia’s death to an “amputation.”

“I find myself talking to her all the time, most of the time in my head,” Balducci told me in a phone conversation. When I asked him whom he confides in, he admitted, “Maybe I don’t have any close friends.”

Disoriented and disorganized since Claudia died, he said his “anxiety has exploded.”

We spoke in late February. Two weeks later, Balducci moved from Tampa to New Orleans, to be near his son and daughter-in-law and their two teenagers.

“I am planning to help as much as possible with my grandchildren,” he said. “Life has to go on.”

Verne Ostrander, a carpenter in the small town of Willits, California, about 140 miles north of San Francisco, was reflective when I spoke with him, also in late February. His second wife, Cindy Morninglight, died four years ago after a long battle with cancer.

“Here I am, almost 80 years old — alone,” Ostrander said. “Who would have guessed?”

When Ostrander isn’t painting watercolors, composing music, or playing guitar, “I fall into this lonely state, and I cry quite a bit,” he told me. “I don’t ignore those feelings. I let myself feel them. It’s like therapy.”

Ostrander has lived in Willits for nearly 50 years and belongs to a men’s group and a couples’ group that’s been meeting for 20 years. He’s in remarkably good health and in close touch with his three adult children, who live within easy driving distance.

“The hard part of living alone is missing Cindy,” he told me. “The good part is the freedom to do whatever I want. My goal is to live another 20 to 30 years and become a better artist and get to know my kids when they get older.”

The Rev. Johnny Walker, 76, lives in a low-income apartment building in a financially challenged neighborhood on Chicago’s West Side. Twice divorced, he’s been on his own for five years. He, too, has close family connections. At least one of his several children and grandchildren checks in on him every day.

Walker says he had a life-changing religious conversion in 1993. Since then, he has depended on his faith and his church for a sense of meaning and community.

“It’s not hard being alone,” Walker said when I asked whether he was lonely. “I accept Christ in my life, and he said that he would never leave us or forsake us. When I wake up in the morning, that’s a new blessing. I just thank God that he has brought me this far.”

Waldinger recommended that men “make an effort every day to be in touch with people. Find what you love — golf, gardening, birdwatching, pickleball, working on a political campaign — and pursue it,” he said. “Put yourself in a situation where you’re going to see the same people over and over again. Because that’s the most natural way conversations get struck up and friendships start to develop.”

Rousseau, the retired South Carolina doctor, said he doesn’t think about the future much. After feeling lost for several years, he moved across the country to Jackson, Wyoming, in the summer of 2023. He embraced solitude, choosing a remarkably isolated spot to live — a 150-square-foot cabin with no running water and no bathroom, surrounded by 25,000 undeveloped acres of public and privately owned land.

“Yes, I’m still lonely, but the nature and the beauty here totally changed me and focused me on what’s really important,” he told me, describing a feeling of redemption in his solitude.

Rousseau realizes that the death of his parents and a very close friend in his childhood left him with a sense of loss that he kept at bay for most of his life. Now, he said, rather than denying his vulnerability, he’s trying to live with it. “There’s only so long you can put off dealing with all the things you’re trying to escape from.”

It’s not the life he envisioned, but it’s one that fits him, Rousseau said. He stays busy with volunteer activities — cleaning tanks and running tours at Jackson’s fish hatchery, serving as a part-time park ranger, and maintaining trails in nearby national forests. Those activities put him in touch with other people, mostly strangers, only intermittently.

What will happen to him when this way of living is no longer possible?

“I wish I had an answer, but I don’t,” Rousseau said. “I don’t see my daughters taking care of me. As far as someone else, I don’t think there’s anyone else who’s going to help me.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit http://kffhealthnews.org/columnists to submit your requests or tips.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

Subscribe to KFF Health News’ free Morning Briefing.